The experience of thalassemic adults with their treatment

Abstract

This study, based on medical anthropology and oral reports, analyzes the meanings attributed by thalassemic adults to their experiences with the treatment. Interviews were used to collect data, which were analyzed through inductive thematic analysis. Eleven young adults, six of whom were men, at different ages, with different educational levels and occupations participated in the study. The meanings are discussed through the theme "the lives of patients with thalassemia in relation to their treatment". This core meaning highlights the difference made in their identity by having the disease trait, the recognition of the importance of adhering to their treatment, the difficulties in maintaining their social functions, the patients' irregular treatment adherence and their justifications for nonadherence to their treatment. Thalassemic patients conform to their condition and employ a normalization strategy to control the disease and justify irregular treatment adherence.Descriptors: Beta-Thalassemia/therapy; Culture; Nursing. Descritores: Talassemia Beta/terapia; Cultura; Enfermagem. La experiencia de los talasémicos adultos con su tratamientoEl objetivo de este estudio fue analizar los sentidos dados por los talasémicos adultos a su experiencia con el tratamiento, con base en la antropología médica y en el método del relato oral. Para la recolección de datos usamos entrevistas y seguimos el análisis temático inductivo. Participaron once adultos jóvenes, seis del sexo masculino; con edades, niveles educacionales y profesiones, distintas. Los sentidos da la experiencia son presentados por el tema "La vida del portador de talasemia con el tratamiento". El tema destaca la identidad de ser diferente por: el trazo de la enfermedad, el reconocimiento de la importancia de la adhesión al tratamiento, las dificultades en mantener sus funciones sociales y los episodios de irregularidad en la terapia y sus justificaciones. Aprendimos que los portadores están resignados con su condición y emplean la estrategia de normalización para el control de la enfermedad y para justificar la irregularidad en el tratamiento.Descriptores: Talasemia Beta/terapia; Cultura; Enfermería. Introduction The impact of thalassemia major and its treatments on the life of adult patientsA study addressing treatment adherence among 40 American individuals older than 18 years old showed that 37 of them used chelators through infusion; 77% of them had missed at least one dose in the previous month due to its side effects such as pain and irritation at the application site. The authors concluded that the chelator's side effects are responsible for non-adherence to treatment (4) .The expectations of thalassemic individuals in relation to life composed the topic of a study involving 67 Greek patients aged between 18 and 45 years old.Of these, 75% had a bachelor's degree, 71% worked, 67% had negative treatment adherence and 77.6%had important complications. The results showed that pessimism in relation to the future was predominant among those with complicatio...

Exploring Iranian β-Thalassemia major patients’ perception of barriers and facilitators of adherence to treatment: A qualitative study

“…It is believed that lack of immediate consequences of insufficient iron chelation therapy, unavoidably escalates the risk of developing iron overload complications in future ( 10 , 20 ). In line with our findings, previous studies found that delay in the occurrence of complications can potentially lead to discontinued or irregular following of prescribed regimens by the patients ( 18 , 19 ). Therefore, healthcare providers need to continually emphasize the importance of regular chelation therapy and assessment of body iron to patients for improving their survival chance ( 18 , 19 ).…”

“…In line with our findings, previous studies found that delay in the occurrence of complications can potentially lead to discontinued or irregular following of prescribed regimens by the patients ( 18 , 19 ). Therefore, healthcare providers need to continually emphasize the importance of regular chelation therapy and assessment of body iron to patients for improving their survival chance ( 18 , 19 ). Another two important barriers of adherence to treatment were staff’s heavy workload and insufficient follow-up of healthcare providers.…”

“…Zamani et al showed that the probability of long-term survival was significantly lower for β-TM patients who lived in rural areas, possibly due to their difficult access to healthcare facilities ( 17 ). Regular blood transfusion throughout life improves the prognosis of β-TM patients ( 18 ). Nonetheless, transfusion-related iron overload complications may be associated with higher mortality risk and shorter survival ( 19 ).…”

The Relationship Between Psychosocial Status and Adherence to Treatment Regimen in Adolescents With Thalassemia

“…This process can reduce the liver iron burden and the incidence of functional disorders of the heart, pancreas, and other organs. Besides, it improves growth and sexual maturation and extends the patients' life span [6]. Before and after the deferoxamine initiation, it is necessary to regularly measure the patient's serum ferritin level (every 6 months) [7].…”